As dedicated patient experts we welcome Ontario Premier Wynne’s Mandate Letter to Health Minister Eric Hoskins. We are encouraged that in an interview with the Globe and Mail Minister Hoskins committed himself to “improving the patient experience” and the Mandate letter leads with a priority to “Putting Patients at the Centre”.
In our many patient roles, we’ve heard the platitudes of “patient-centred care” and “patient experience” bandied about like badminton birdies that can fall to the ground with nary a concern and then replayed with the same casual whimsy.
Will this time be different? We’d like to give Minister Hoskins the benefit of the doubt and support his intent with a vision that embraces the opportunity that a focus on patient experience provides.
We start by providing a common understanding of the “patient experience.” The Beryl Institute, a global community of practice focused on improving the patient experience in healthcare, defines patient experience as: “the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.”
This definition tells us that patient experience is more than just satisfied patients. Satisfaction is the result of a single interaction that can evaporate, while experience is the full narrative arc that leaves a lasting impact. The challenge to our healthcare leaders in policy, administration, professional practice etc, is to undertake methodologies for engaging patient and family voices that ensure the best service, safety and quality outcomes.
How do our institutions currently stack up to the challenge of patient experience? The Change Foundation studied the emergence of Patient and Family Advisory Councils (PFAC) in Ontario since the enactment in 2010 of The Excellent Care for All Act (ECFAA), which mandated that hospitals “establish a patient relations process to address and improve the patient experience.” The Change Foundation study, “Patient/Family Advisory Councils in Ontario Hospitals: AT WORK, IN PLAY”, found that almost half of councils interviewed were in infancy. Furthermore, while the report identifies 7 categories in which the PFACs are accountable, there is no dedicated position representing patient experience. For many institutions PFACs are simply the first tactical step to engage with patients, and by no means the only patient engagement strategy available.
It is our view that a commitment to prioritize patient experience must come from executive leadership, to instil patient centricity as a core principle of the institution and its culture, demonstrated through a strategic partnership with patients.
We call on Minister Hoskins to act boldly in his capacity as the province’s healthcare leader and to role model the expectation mandated by the Premier by “putting patients at the Centre.” How? By bringing the patient voice to the Ministry with the creation of “The Minister’s Patient and Family Advisory Council”.
We view this Patient Council as a professional advisory panel composed of dedicated patient experts with the appropriate professional patient experience and the personal experience of chronic illness informing their perspective. There are numerous qualified patient experts who fit this criteria – people who:
- Are engaged in the global conversation around and are familiar with patient-centred care and patient engagement initiatives
- Understand the need to redevelop the language of partnership in the discourse between patients and healthcare professionals
- Have a demonstrated understanding and experience with patient and family advisory councils
- Have demonstrated a capacity for building, supporting and advocating with a patient voice.
As The Change Foundation report emphasizes, patient experience is an evolving trend that demands that this Council must perform at the highest level. Consequently we do not view it as a volunteer position, as is common in hospitals. Rather, its members must be properly compensated on equal terms as other expert advisors and consultants. They need to be accountable and perform according to a specific scope of work in order to have maximum impact.
The Minister’s Council will advise on ministry strategies with the exclusive objective to improve patient experience. By applying patient experience across the breadth of the ministry, Minister Hoskins would be faithfully demonstrating the fundamental principles of collaboration and transparency that form the core of the Mandate letter from the Premier.
Ultimately, if Minister Hoskins wants to deliver on his promise to improve the patient experience, he’s going to have to walk the talk, and that means making patient influence felt system-wide. It’s time to elevate the recognition of patient experience as the key driver of system transformation if we are to build a compassionate and sustainable system that serves the health needs of the entire population.
It’s no longer good enough for healthcare services to be delivered without the patient voice having a reserved seat at the government table. We believe that a dedicated role for patient experience, provided by a patient’s voice, has the highest potential to develop meaningful patient centred strategy, the most effective tactical operations and the best health outcomes for patients and families. It’s time to integrate patient experience into everything the Ministry does, rather than function as a solitary initiative.
It’s time to put the patient in Queen’s Park.
The comments section is closed.
Thank you for these wonderful comments. I am a person, now in my 60’s, who has suffered and still am suffering from Auto-Immune disease(s). Since my first ever Rheumatologist left the City I live in, about 30 years ago, I have not been able to find an empathetic rheumatological Specialist. I am basically at my wits end. All I ever wanted was a caring and bright Rheumatologist.
About 4 years ago, experiencing extreme difficulty breathing(for the first time) I was diagnosed with Sarcoidosis. I was on strong dosages of Prednisone for months and finally weaned off it totally after about a year. I do not however have a Rheumatologist. I am in extreme pain constantly and have been depressed all my life. This situation does not help my situation. I have had 2 total knee replacements, 2 neck surgeries.
Thank you for developing a philosophy and practice that puts patients first. As a long term survivor of catastrophic injuries in 1967 with the skill and support of an incredible team of profession medical specialist. In 2009 I had a series of errors and omissions that rendered me totally dependent on the hospital system. With the new fiscal directives the management team has decided that there has to be a turnaround time of 90 days. As a Treatment Decisions Consultant at the Office of the Public Guardian and Trustee I became very aware and skilled in the placement of patients in the Long Term Facilities. They are now wanting to push me out the door. Statistically, I was told by several staff who staff on the QT that 30% will die in the first three months, another significant number will be gone in 6 months and the remainder will be gone within one year. As a survivor who went to college and university and worked in the public service for over 33 years I find it totally unacceptable that I am going get kicked out the door with less than a year to live. I love life despite my disability and I want to live.
Doctor’s enthusiastically suggest a warm water exercise program for patients suffering with all forms of arthritis and fibromyalgia. In Whitby, ON we have had the benefit of enjoying a warm water exercise program at a pool in the Ontario Shores facility. This program was been operated entirely by volunteers under the structure of a not for profit organization known as Durham Warm Water Program or DWWAP. In May 2015, Ontario Shores terminated DWWAP’s contract under the advice of their Risk Assessment Committee. Over 200 people have had access to this therapeutic like program for the past fifteen years. Prevention would seem to be a key element in keep our aging population dominated by these conditions from getting worse. Please help us; we have nowhere to go. This program not just elevates our day to day pain but also prevents us from having to turn back to the overburdened health care system as our symptoms become worse.
I look forward to your comments.
Thank you,
Janice Condy
Well put, Zal and Dawn. If patients are to be heard, they must be at the government table. Thank you also for raising the point about compensation. If the patient voice is to be valued, it deserves recognition.
Zal and Dawn,
This is well written and certainly captures the key points of what it means to be patient centred and developing meaningful partnerships that include the patient.
I endorse and welcome continued conversations outlined in this post.
Thank you for your leadership
Zal and Dawn,
Kudos for championing this cause. Having been a layperson at the ‘by invitation’ Toronto International Summit on Leadership Education for Physicians, I was both dismayed and confounded when this scenario was put forward – with nary a thot to impact on patient:
“Doctor berates a nurse in public.”
While the room cringed on behalf of the nurse and the ‘leadership model’ of this sad reality, it was only when I shared my point of view – gawdawful for patient to be privy to – that the facilitator added with the patient at its center’ to ‘doctors should work respectfully with the team’
I was encouraged by the immediate recognition of the tunnel vision, and – as you can imagine – crestfallen by its obvious status quo.
There is much work to be done, but with voices like ours it’s surely begun!
Kathy
Great timing for this as a real opportunity to bring focused attention and public understanding of what it means to work with patients as partners in the health care system. We can learn from the BC experience in taking this kind of bold step at a provincial level. We need to learn together on this!
Patients Canada is also working to put the patient experience at the forefront of planning for health services and adjusting current patients health service offerings. Patients Canada has created committees of patients to share their experiences with health professionals for discussion and improvements. Too often the planning is done by the service providers from their perspective.
Dr Shalom Glouberman is President of this organization and has made great inroads. Please share this with your readers. Everyone’s voice counts!
D Lynch
Senior Advocate, Carer
Individuals affected by a decision should help make that decision, so of course an experienced patient should be a member of the Minister’s Patient and Family Council, otherwise it cannot pretend to be a PATIENT and Family Council. And patient membership must have a voice and vote the same as all other members. Nobody has all the answers, and nobody can see all perspectives to a problem. For rational, intelligent discussions and decisions to take place experience from all perspectives must participate. Without patients at the table the same old mistakes are apt to be made. I just hope the Minister is brave enough to implement his good intent in the face of the naysayers who are terrified by the thought of having to deal with individuals without bits of paper in their pocket that testify to their expertise. The individual that lives with disease every minute of the day, who knows first hand where the problems and barriers lie IS an expert. We need that expertise at the Minister’s table.
Well said, Dawn and Zal. As a person who has lived with Juvenile Idiopathic Arthritis (JIA) since I was 14, I have had so many good and bad experiences in our healthcare system over the last 23 years. These experiences place me in a unique position to advise on what needs to be improved in order to make the patient experience better. And when I say patients, I mean people like me who have actually used the healthcare system. Me and other patients have the most at stake here – time for our voices to be heard loud and clear.
Well said!!!
This is necessary, desirable and timely. There is increasing awareness in enlightened healthcare circles of the positive impact of patient engagement and patient advocacy on health outcomes and system efficiency. Patients need a formal and recognized seat at the table, not an ad-hoc and unreliable back-channel.You are so right that this position needs to be accountable, adequately paid, and clearly defined. With rising costs and shrinking resources, we need to do everything we can to ensure that the implementation and delivery of healthcare is transparent, efficient and effective. Leaving out the voice and input of the ultimate customer — the patient — is not only inefficient, it is financially irresponsible. Patients have been isolated in the past, because ‘everyone’s experience is different’ — or so we were told, and we believed it. The barriers to inter-patient communication that kept that myth alive have broken down. This is the time to make a formal and lasting change by bringing the voice of the patient – of all of the patients – into the conversation. Well done, Dawn and Zal! Looking forward to the next steps!
Very well said! Partnering with patients and families at all levels across the healthcare continuum is not only the smart thing to do it is the right thing to do. It is time to transform our healthcare system together!
I fear that patient experiences will soon be co-opted by the Health IT lobby, like patient-centered care and patient engagement. At the risk of sounding like a conspiracy nut, I fear that today’s fixation with health technology by health care policy makers in the US and presumably Canada, will dictate that we focus more on the online patient experiences people have rather than the actual bedside (or exam room table) experience – where health care is delivered. The huge Health IT lobby (not unlike the big Pharma) these days believes that technology – not high quality interpersonal communications and care – is what will save health care. They are wrong of course…but their voice in industry (HIMSS, Journals, etc..) drowns out calls for humanism from the rest of us.
Stephen Wilkins, MPH
Mind The Gap Academy
http://www.mindthegapacademy.com
Role Play: let’s start the Minister in the ER and not leave out any of the comprehensive experience through diagnosis to treatment to hospital stay (including food, accommodation cleanliness etc.)! – then invite him to contribute his Patient Perspective and Recommendations!
Who could disagree with the idea of according patients and families the role they deserve in every aspect of healthcare policy and delivery? But a seat at the table, where patients and families have a genuinely transformative voice at least equal to all the other healthcare inputs government receives? Not likely to happen.
The fact is patients and families who advocate for recognition and respect have never been welcome in the building, much less in the inner sanctum where healthcare policy is created. And there is a yawning gap between the theory of patient and family advocacy and what actually occurs in the clinical setting that is likely to keep it that way.
Just after I discovered my mother, then 89, had been left flat on her back while on life support in one of Canada’s leading trauma centres, with pools of fluid overflowing from her mouth onto her gown and bed, I saw all these posters on the walls reminding clinicians about the dangers of ventilator-associated pneumonia. Keeping the patient’s bed at a proper angle and not leaving them lying flat was at the top of the list of things to do. But in my mother’s case, her care team didn’t, and she developed ventilator-associated pneumonia. It was a pretty easy patient safety protocol to follow, except this giant teaching hospital not only could not be bothered, but it strenuously resented being questioned as to why it departed from this standard, while making me out to be the offending party. I didn’t know it at the time, of course, but this was just the beginning of a long cascade of breakdowns and errors — for which there was never any apology or truthful explanation — that eventually left my mother terribly disabled.
Odd, perhaps, but I didn’t find the other messages on the walls that encouraged patients and families to speak up and voice their concerns to be particularly consoling. It takes more than a willingness on the part of walls to listen in order to put patients and families first.
The point is that until the infrastructure of healthcare accountability, which is currently crumbling under the weight of entrenched professional interests, hospital cost-cutting measures and a growing army of high-priced lawyers who are paid with public funds to help hide inconvenient truths, no amount of table talk is going to change that. Only strongly voiced public pressure, and an unrelenting focus on the human and financial costs of avoidable hospital errors — the third leading cause of death in Canada and the United States — and the culture of cover-up that allows them to continue, will achieve that goal.
Where you get to sit depends on where you stand in the advocacy of patient protection. And for too many, that means being left out in the cold.
I wish I didn’t agree with you, but I believe you’re correct. The big changes to Ontario’s healthcare have all happened without input from the users of the system. The move to centralize hospital care into large institutions, closing local hospitals in smaller urban centres, may suit some of the providers (i.e. surgeons) but does not necessarily serve the best interest of the populace. Moreover, the promised community supports have not materialized. There are over 20,000 people waiting for Long Term Care beds, for instance, and there is a crisis in home care.
Dr. Hoskins seems genuinely interested in reforming Ontario’s healthcare system so that the patient rather than the system is everyone’s first priority. Having a professional patient advocate, someone who has a proven commitment to fighting for patients’ rights and understands the strengths and weaknesses of our healthcare system as a result of personal experience and study, is absolutely imperative to making it work better for everyone. (Zal Press strikes me as the ideal man for the job.)
Patients have a great deal to offer in the way of advice simply because they’ve been ‘in the trenches’ of the healthcare system and understand it in a way that only those who’ve lived it can. Dr. Hoskins, as a medical doctor, knows that; he’s seen it first-hand, so, surely cannot disagree.
Go for it! Our government is supposed to be for the people, so let the people, the patients, have a voice where it will be heard. Good luck!
Heather MacDonald
Remicade Users Unite
http://www.facebook.com/affordabledrugcare
Sorry folks but this article is just about self-interest. This isn’t a council of PATIENTS, it’s a council of so-called patient experts – i.e self-appointed people who claim to speak for patients – unelected and unaccountable.
I am so tired of people in the health care system wrapping themselves in the flag of patients to promote their own self-interest. This will be just another talking shop for health care insiders to navel gaze.
Hello David:
I appreciate your reflections on our opinion piece. Let me clarify for you that I am a patient expert by virtue of being a patient – I have lived with a chronic illness called rheumatoid arthritis for nearly a decade. As such, until a cure is found, I will be a patient for the rest of my life, and with each day, month, and year that I remain a patient, I grow knowledge and expertise about my own experience and about others’ experiences. I have experienced the goods and bads of our healthcare system, and I know what it’s like to not have insurance that will cover an expensive medication, or to be denied insurance simply because you have a chronic illness.
I can also tell you that I do not simply claim to speak for other patients, I have been chosen to do so by other patients, who are my peers. In my primarily volunteer role as Vice President at the Canadian Arthritis Patient Alliance, I have been selected by my Board, who all live with some form of arthritis, to be one of their spokespersons. Additionally, I mentor and speak to many different types of patients on my own time – and they are referred to me by others. I have chosen to put myself out there, and to apply like all others are able to, to volunteer positions as a patient representative at the Wait Time Alliance and at the CIHR. Quite simply, not all patients want to speak openly and publicly about their private experiences or even have the energy or time to do so. I have decided that it’s important for me to communicate my journey and to help be a voice for those who can’t or don’t want to speak publicly.
And lastly, you’re right – this idea is about self-interest. It’s about self-interest by patients who live with a chronic disease; who have been handed this sentence by virtue of the perfect mix of their genetics and environment, and who have chosen to do something about it. There is nothing out there like we are proposing. We want to take action and we want to be compensated for our expertise, just like anyone who has expertise and who benefits from it by making a living. I didn’t go to school to become a patient; being a patient chose me. I’ve decided make the most of living with a chronic illness through seeing the positives as much as possible, and if that’s self-interest, then I’m fine with that label.
Sincerely,
Dawn
I support your initiative. The patient voice needs to be recognized in a new way. No longer is it acceptable for patients and patient advisory groups to be regarded as merely a show piece because it has become fashionable for the patient to have a say. After all if a tree falls in the forest and there was noone there to hear it, did the tree really fall? We as a group need to be taken seriously, and what better way than to give us power where it truly counts in government, creating new policy in an effort to produce better outcomes for patients. Lori
Well said Dawn. I am 55 years old and have suffered with osteoarthritis for about 15 years. It has become more debilitating in the last 3 years as it progressed to both of my knees. Every step I take hurts. Pain meds don’t help. I recently had double arthroscopic surgery but my arthritis is severe. Members of my family have osteoarthritis, chronic back pain and reflex sympathetic dystrophy (diagnosed at 15 years of age). No one should have to live with chronic pain. There is no quality of life.
Hi David, I do understand what you are saying. While it is true that there are some patient advocates out there pushing their own agendas and promoting self interest or some just needing to speak their minds, I feel that this initiative is sound. However I believe, should this actually come to fruition, the patients holding these positions not only need to have experience in voicing their opinions but need to have experience in prior policy making to truly be productive and beneficial.
We need to hear from the EXPERTS, Patients and their families!! Real cahnge can not happen without them at the table!
Tamara Dube
Patient and Family Partnered Care Coordinator
North Bay Regional Health Centre
We hear continually about how much of the provincial budgets healthcare consumes and that it is not sustainable, yet governments continue doing the same thing they have always done expecting different outcomes. It is time to turn the system upside down beginning with a Ministers Patient and Family Advisory Council and we may very well begin to chart a new course that improves outcomes and manages costs at the same time.
Well stated! Where they do exist, patient and family advisory councils are all too often not considered professional bodies with the expertise, responsibility, influence, and reimbursement that implies. It takes courage and foresight for leaders to challenge the limited traditional role of patients simply as recipients of advice during times of illness. Patients are the only true experts when it comes to patient experience. Recognizing the value to be found in advice drawn directly from patient experience – particularly when that experience is combined with broad involvement in a wider global community of patients – and incorporating that advice in a meaningful way when making business decisions about service delivery will, I hope, lead to a greater appreciation of patient and family advisory councils as professional bodies essential to great leadership and improved personal, clinical and financial outcomes .
Excellent initiative. Totally support it!
I agree and I support.
I agree with you. Well said!
This is a great initiative and one I fully support from a professional and personal point of view.
While we look at high-level councils and organizations of professional patient experts, we continue to miss out on the wisdom, experiences and fears of patients going through treatments in hospitals, long-term and rehab facilities and at home. Each new structure to get input from patients, each new study, each new report delays actions that can happen immediately and at little cost. We know who gets the best care in Canada and it is time to ensure that more people reach that standard of excellence. We have all the knowledge and tools right now to make that happen. All we need is the sense of urgency this change requires both from the top down, but also from the bottom up. Start by recording patients comments all aspects of their care regularly — as a sixth vital sign — rather than just a satisfaction survey on their discharge from a program. Act on that sixth vital sign as you would if a patients heart rate, respiration, temperature, blood pressure and pain measurements were beyond normal. Take the data from the bedside patient records to make systemic changes required. Patients have waited long enough.
Yes, It is time to formalize the role of the patient as a partner in healthcare. Excluding the major stakeholder from decisions and design of healthcare solutions for the future would be a mistake. Now that search engines, peer sharing and social media have almost equalized access to knowledge, the status quo is no more. The knowledge gap between doctor and patient has been shrinking quickly.
This has created many informed, enabled and engaged patients who want a voice in decision making. They will be able to help design a more successful health experience with Patients at the Center. The use of Design Thinking will lead to positive change.
Absolutely. For too long the fundamental acknowledgement of patients’ voices and opinions and just how important the patient- provider relationship truly is, have gone unsounded. The time has come. It is long overdue.
Well said Zal and Dawn, thank you for this well articulated opinion piece, my hope is that it is heard and acted upon!